Good morning.I've found this forum out of desperation having experienced what I now know are symptoms of B12 deficiency for a few years.
After repeated B12 levels over the years which consistently showed my levels dropping (treatable since 2021 in some parts of the country) they were finally low enough at 112 for a diagnosis.
My hydroxycobalamin loading doses were prescribed but no appointments were available until February 2024!
I'm a registered nurse so after pleading with the practice to allow me to self administer without success I decided to purchase needles and a sharps box and injected myself. I've seen no improvement at all.
I asked that the GP prescribe more B12 so that I may continue as per the guidelines when neuro involvement is present but they flatly refused stating because they don't know why im b12 deficient until my next blood test (a week away) they're not prepared to prescribe.
I pointed out that I've had chronic gastritis for years and 2 diagnoses of h pylori but they're focused on ruling out PA before they discuss it further meanwhile I'm told even if it is PA they won't follow guidance and will stick to 3 monthly injections.
I feel like I'm getting nowhere and my attempts to engage them in any meaningful discussion is leading to a less favourable outcome.
Has anyone experienced this and if so is there anything I can do to right this awful situation.
My symptoms are: tinnitus, pulsatile tinnitus, lack of sensation in left hand, overwhelming dizziness and brain fog. I also struggle with swallowing.
I'd really appreciate any advice.
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Betwelvepatient
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Thank you both so much for such a quick and helpful reply.I've spoken to the practice manager to request a meeting but she's insisted a speak with the lead GP first so that they can explain why they won't supply the means to self inject and why they aren't willing to follow bnf and nice guidance. Then if I'm still "confused" I can complain. It was a shocking way to handle a genuine patient concern and despite being so frustrated with this response which serves only to tell me face to face "no" I was too exhausted to argue the point at the time.
I'd already sent a load of evidence based guidance with the request that my prescription continues. That was met with the above response.
No other investigations have been ordered other than a blood test to determine the cause.
Maybe the specialist referrals will follow?
I'm at my wits end because now my symptoms are so debilitating I can't work and that isn't going to change until thr correct treatment regime is started so my income is drastically affected and the knock on effect is causing serious problems for me.
I am sorry to read your story but it is a familiar one ! Most of use found this site out of desperation and many of us self inject. My surgery was the same and gave a loading dose then the 3 monthly injection which did not keep my symptoms at bay. Out of desperation I requested two monthly injections which after a battle were prescribed.
I can not see the point on having guide lines if they are not followed ! Many of us have been refered to neurologist and waited months some over a year to be seen, whilst waiting they have endured further nerve damage. Some of these neurologist havn't a clue of the symptoms or how to treat the deficiency.
Your in catch a two situation. If you inject your levels will be higher on further testing and then the fools will say your in range, we cant seem to win. Out of pure frustration and desperation I now inject daily. Like yourself I have the gastritis mine being errosive, bowel inflammation ect. I am three years injecting and only now being investigated by a gastrologist ! ! !
Surely there are rules that they have to follow the guide lines. Have you spoken to the surgery manager ? If not it might be worth doing so.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US) authors)
Very comprehensive with lots of case studies.
UK B12 documents
I found "NICE CKS Anaemia - B12 and Folate deficiency" useful to read.
Compare the local B12 deficiency guidelines used by your ICB or Health Board with NICE CKS Anaemia - B12 and Folate deficiency". Also useful to look at ICBs guidelines for anaemia and macrocytic anaemia.
NICE are developing new B12 deficiency guidelines to be published in 2024.
Should be more useful links in pinned post "Various PA/B12D resources". Pinned posts are on right hand side of screen if on computer. Scroll up or down to find them.
Help for doctors/health professionals
1) PAS website has a page for health professionals.
They can join PAS as associate members at no charge.
Well if you follow posts on this forum , you will know that many of us have had terrible experiences with GPs who are so ignorant about Pernicious Anaemia/ B12 deficiency . My treatment for diagnosed( Positive Intrinsic Factor Antibodies test) Pernicious Anaemia was so delayed that I now have an irreversible symptom. Don’t let this happen to you . Most of us on here have to self inject B12 to keep well ,at different rates of regularity . Anything between daily and 3 monthly .
Here is some information that you might need if all else fails
The following German online pharmacies will deliver B12 depot single use ampoules to U.K. .
apohealth.de Site is obtainable in English (Union flag, bottom left on my device ) also deliver World wide but not to Australia or New Zealand .
versandapo.de Site is in German . Use Google chrome to obtain translation .
The following brands are obtainable
Panpharma ( formerly Rotexmedica ) b12 depot 1mg x 1ml ampoule ( depot indicates Hydroxocobalamin) ref no 16199653. This is the most popular ampoule used by PAS members .
It is the best value , but sometimes is out of stock . You can then opt to be emailed to be told when it is back in stock . Just looked it up — Panpharma is out of stock at the moment !
If Panpharma is unavailable, I use Pascoe , as I prefer to inject just 1ml …
Hevert is fine , but is a 2ml injection.
Pascoe B12 depot 1.5mg x 1ml ampoules- Packet of 10 ref no 07568672
Pascoe b12 depot 1.5 mg x 1ml ampoules-10 packets of 10 ampoules (100)
Ref no 07568695
( I would only order 100 if you need very frequent B12 injections. This is incase you get 100 ampoules with a short use-by date . Buying 100 ampoules halves the price per packet !
Hevert b12 depot 1mg x2ml ampoules packet of 10
Ref no 06078368
Hevert b12 depot 10 packets of 10 ampoules- ( 100)
Ref no 06078380
When filling out your address, do fill in your country first of all . “Germany”: will be displayed , so you must change this with the drop-down list which will appear , — to U.K./ Gross Brittanien/ Vereinigtes Königreich GrossBrttaniens — how ever it may be expressed. If you don’t do this , your U.K. address and post code will not be accepted , and you will end up in a tizzy . We don’t want that !
I felt so upset for you reading your post as I have been in your situation like many others here.
I really empathise and totally get it when you say you don’t have the energy to argue.
This is what I did - like you I was prescribed loading doses and then nothing as I was expected to wait 12 weeks despite neurological involvement.
I focussed on treatment first. I sought a private consultant (I have a PM with details) who taught me to self inject, did some blood tests to discover autoimmune PA and gave me links to reputable suppliers of B12 and outlined the cofactors I would need. The consultant encouraged me to listen to what my body needed and to not be afraid to self treat. There is no benefit to the consultant as I have had no further consultations but they still answer emails. They also wrote to my GP telling them what the tests showed and what was necessary to support me ie 6 monthly blood tests.
I then tackled my GP and whilst they are providing NO B12 at all or cofactors they DO take blood tests as suggested by the consultant and the consultant checks them for me.
This is the current status quo and it’s not ideal but I am at least semi supported and the VAST majority of my learning and support comes from this forum.
I had all the symptoms you describe except the left hand issue. I had terrible reversing out symptoms and was off work for some months. I was 106 ng/l so similar to you.
By self treating I am recovering quickly and living an active life again.
I hope that we can all support you through this horrible time. You have the advantage of medical training which will stand you in good stead as you find your path to recovery your health.
My story is very similar to yours (many of us here in the same boat) I am now an ex nurse as had to take early retirement due to this. I now self inject as couldn’t get doctor to listen or support anything b12 ( I also am hypothyroid and can’t get levels stable). Very low in energy and clarity and know that trying to concentrate in this brain fog is near on impossible.
I am feeling improvement so continue to SI and as suggested on other posts get b12 from apohealth.
Thank God for this forum and its brilliant advice.
I've put in my first order to buy B12 and went with amazon.de (after seeing someone else mention it on here), you can then order from a range of pharmacies and the website is in English! (My German is very poor now).
Wishing you the best. The advice above is excellent. The big hurdle for many of us is the realisation that we have to take matters in to our own hands and the feeling of betrayal by a system we trusted. But once your through to the other side you won't look back.
Recovery takes time and you may find that you need additional nutritional help to fully recover. But the first step is to get your b12 levels up.
Wow. Thank you all so much! The wealth of information and knowledge you all share is awesome.I looked into it in more detail last night (well, as much as my debilitating brain fog eill allow) and now feel quite certain the way forward is through education (myself and my GP), purchasing my own supply and self injecting.
Really disappointing and very frustrating - I feel completely failed by a GP I once trusted.
There must be a way of changing the current system.
I'm considering joining my PPG at the GP surgery to highlight some of the issues facing those diagnosed with PA/B12D - though I'm sure, due to my recent communications with them they'd reject my application.
Has anyone else tried this?
I must point out how bad my mental acuity is at the minute and how I'm struggling to formulate adequate responses. Hopefully this too will improve.
FIRST YOU. You must put yourself first. I learnt to do this the hard way and I still struggle with the implementation of this concept! 🤣🤣
As for the PPG - in time but ONLY after you are well on your road to recovery. I made the same offer and even offered to do a B12D info sheet - to no avail - I hope you have a better outcome but not until about a years time IF NOT LONGER as you need time to recover.
Thank you ☺️. The lack of understanding out there means I feel like no one appreciates how utterly debilitating this is. Ironically, having been a nurse for 15 years, I'm due to start a new job as a practice nurse in the new year though this whole experience is making me doubt whether this is something I now want to pursue. For (many) reasons which have only become apparent since my diagnosis and subsequent experience (which seems an all too common ovcurance due to the inadequacies that exist between the tests, various reference ranges and treatment guidance) I can't see myself lasting within this environment and I certainly won't be healthy enough to join in a matter of weeks.
One thing that might be worth discussing with GPs is that delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases, the spinal cord may be affected, this is called SACD, sub acute combined degeneration of the spinal cord.
I'm not a health professional and I'm not saying you have SACD but I am saying that your GPs should be aware that SACD is a potential consequence of delaying treatment or inadequate treatment. It's my impression that many doctors are not as aware as they should be.
I used to raise issues in written letters to GP as it's my understanding that letters to GP are filed with a patient's medical notes. Useful to have a paper trail in case a formal complaint is needed in future. Always keep copies. Letters could include some of following but keep them short.
Symptoms list
Date of any relevant diagnoses.
Relevant test results
Relevant family/personal medical history
Quotes from UK B12 documents eg NICE/BSH/BNF/local guidelines
See letter writing link in my other reply.
Some GPs may find getting letters irritating but these days, after my difficult experiences I don't worry about that. I always tried to be polite. Some may find assertive patients challenging so be prepared for GP/patient relationship to change.
Consequences
I got to the point of dementia symptoms and spinal symptoms and count myself lucky to have avoided SACD and permanent dementia although I have some permanent symptoms. I realised that if I didn't treat myself I was going to end up in a care home.
It took weeks even months for me to see improvement as I'd been left so long and had so many symptoms (over 50). I did eventually get some NHS treatment.
I need far more B12 than NHS provides as my symptoms start to return very quickly after a B12 injection.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
I used PAS symptoms checklist below and added other symptoms at bottom.
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Symptoms Diary
Some forum members keep a daily or weekly symptoms diary. Maybe track up to ten symptoms and score severity every day or week. Note any blood test results and any treatment given. Look for patterns over time. Could be useful evidence of improvement or deterioration in symptoms to show doctors.
I had some very difficult experiences with the medical profession and suspect I may have PTSD over the way I was dealt with. I cope with this by trying to help others through the forum.
You are certainly helping me and I intend to use your guidance and advice when I write to my GP (again) and have my telephone appointment with them next week.I feel much more empowered and armed with the relevant guidance I'm sure they'll find it difficult to justify refusing to treat me according to my B12 level and symptoms though I fully expect to be fobbed off and will resort to purchasing supplies and treating myself.
I'm so grateful for yours and others support on this forum and your generous guidance.
Have you found your ICBs or Health Board's B12 deficiency guidelines?
I think people should be careful with their privacy and protect their identity on HU.
If you don't mind people here knowing your area of UK, someone may be able to help you find them.
If you can't find them after a search online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Local MP (and MS - Wales, MSP - Scotland) may be able to help.
Threads from HU can sometimes appear on NHS website.
If you want to change your thread to a more private setting
1) Go to original post, click More then click Edit.
2) Scroll down post to Share, click Community Only then Post.
Admins may be able to help if you're not sure about this.
Doctors probably won't like it but have you thought about asking to record appointment (and/or taking someone with you)?
It's my impression that GPs are kinder if there is a witness present.
If you think this is worth doing then best to ask them in advance.
List a few reasons why this would help.
I don't think they can refuse if a patient needs to record due to fatigue, memory problems, concentration problems etc. People with these issues are entitled to reasonable adjustments under equality legislation.
I think it's likely to make them feel uncomfortable though which may be counter-productive.
I'd love to. Unfortunately I have no one who'd be able to spare the time to come along. I've always been the advocate within my friendship group and family so I'm struggling to ask for that type of support for myself though it would be very nice.
Hi yes, I'm being treated as per the North of Tyne prescribing committee guidance.Their guidance sets the reference range lower limit to one of the lowest in the country at 115. The next county over would've treated me 2 years ago so I've suffered due to my geographical location prior to diagnosis and now I'm at the mercy of their own interpretation of NICE and BNF guidance.
The flow chart is quite confusing but it recommends that treatment is every other day for neuro symptoms so I really don't know why my GP is refusing to prescribe as per their own guidance.
I have a long, documented history of neuro symptoms but at my last consultation one of the GPs told me they wouldn't expect to see such severe symptoms at 112 because its just outside the normal range. I felt certain she was accusing me of exaggerating my symptoms and this was confirmed when she arranged an urgent CT scan.
My understanding of these guidelines and the first flowchart on page 5 is that with a result of 112ng/L and neurological symptoms you should be on long term IM B12 injections.
See box at bottom left of first flowchart. See BNF hydroxocobalamin link in my other reply.
Might be worth contacting person who runs B12info.com.
She has in the past blogged about UK areas with very low set range for serum B12.
Have you been referred to a neurologist or haematologist?
See Management section in NICE CKS Anaemia - Vitamin B12 and Folate deficiency which discusses when people should be referred to neurologist/haematologist/gastro-enterologist. Scroll down page.
"but they're focused on ruling out PA before they discuss it further "
It's hard to rule out PA. NICE CKS says in Background Information that IFA (Intrinsic Factor Antibody) test for PA is negative in about half of people with PA. Perhaps you could show them this.
The BSH flowchart in other reply discusses when Antibody Negative PA should be diagnosed.
The thread about Useful tests for PA and B12 deficiency mentions other tests that can help to diagnose PA eg gastrin.
Have you had a gastrin test? Possible to get it privately in UK but NHS may not accept private results.
When a patients tests negative for antibodies, but Pernicious Anaemia is likely, this test can be used. 85-90% of patients with Pernicious Anaemia will have a high serum gastrine."
There is a type of gastritis associated with PA called AMAG, auto-immune metaplastic atrophic gastritis. I think where the gastritis is in the gut can sometimes give a clue to the cause. Search online for "PA AMAG gastritis" for more info. Some info on PAS website.
GUTS UK is a UK charity dealing with gut conditions.
Any chance of an internal parasite eg fish tapeworm?
One clue that an internal parasite may be present is an increase in eosinophils, a type of white blood cell. Eosinophil results will be in Full Blood Count results.
Has your GP reviewed any medication you are on?
Some medicines drugs have been associated with low B12 and some with low folate eg metformin, a diabetes drug, PPI drugs, some anti-epileptic drugs and others.
I've assumed your low B12 is not linked to diet as you mention gastritis. Has GP discussed diet with you?
I'm so grateful for your reply because it confirmed that I'd read the flowchart correctly and that my GP isn't following it.
I had a last minute blood test yesterday evening as there was a cancellation so I'm yet to find out what was ordered but 4 vials were taken and I suspect it will be used to investigate PA, IF, MCV etc to build a picture.
I really already know that it can't be diet related as I eat an unrestricted diet and plenty of fortified cereals.
I feel its related to the 20 years of GERD, for which I've used prescribed PPI's and antacids interchangeably. I've also had 2 h pylori infections (symptoms for many years prior to confirmation) and an endoscopy last year revealed inflammation. They told me to just keep taking PPIs but I cannot tolerate them at all so I take antacids infrequently.
My pain in that area is worsening and for that reason I'm considering a private MRI as my endoscopy wasn't completed due to my pulling the camera out before they could conclude the full examination but they're happy everything is fine.
I have a 10 minute appointment with th4 lead GP next week so I'm going to keep my focus on treatment guidelines.
I don't know what on earth he can use to justify not following it so I cant really prepare.
If anyone else has been in the position I'm in (I have recorded neuro symptoms with a B12 deficiency of unknown cause, at the time of writing this) and because of that he will not agree to injections.
There are lots of articles online that suggest an association between PPI drugs and low B12 levels.
Maybe you could write a short letter to reach GP before your appt, with a few points you want to discuss during appointment. That gives GP chance to prepare.
There are some articles online suggesting an association between H Pylori infection and PA.
The Mission Impossible music is going in my head! You are going to be our 'inside man' in the system! Welcome to the PA club. Self injection is the answer to the cobalt blues 💙
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